Since many folks have expressed an interest in reading notes from our monthly HOPE virtual support meetings, we’ll be sharing them here as a blog post.

Here are our notes from our meeting on July 5, 2023. Our next meeting is August 2, 2023; you can register here.

1. One participant provided handout about the advantages/necessity of having both telecoil and Bluetooth on hearing devices. She noted that both technologies are important, because each can work well in different environments, giving you better hearing in a wide variety of hearing situations.  Audiologists too often promote only Bluetooth, and often don’t mention or give incorrect information about telecoils.   It is important to ask for both of them! 
   
2. Another participant is considering CI surgery and wondered if people had anything to share about their experiences.  People shared the following:

• A participant 2 CIs:  “I’m doing well with one, not so much with the other. I had problems with a facial nerve relating to one side, and have some difficulty using the phone. Rehab is important.”
• A participant with 2 CIs: “I had a very positive experience. Books on tape were useful. Patience is important.  It is all challenging and exciting.”
• A participant with 2 CIs: “It is the best thing I have ever done. It will take time.”
• A participant with 2 CIs: “Don’t give up. For some people it takes longer to adjust.”
• A participant with 2 CIs: “Others have commented how much better I hear and how much easier it is to converse with me. “
• A participant with 1 CI:  “Music is difficult and is one thing I lost. You can do music rehab.”
• A participant with 2 CIs: “Music rehab programs are getting better. I felt it was more important to understand speech than to hear music.”
• A participant with 2 CIs: “I gave up piano because it sounded harsh and discordant. Music sounds different but is still pleasurable. You may have to listen to different kinds of music to find out which music you still like.”
• A participant with 2 CIs:  “There is a great app called “Heard That.” It is good for eliminating background noise and for me works better than a mini mic.”
• Another participant’s comment on the “HeardThat” app: “I used it with 4 friends under a loud fan and could hear better than the others. It worked great, but did raise the level of the fan noise.”
• A participant with 1 CI: “I have problems with equilibrium and am fearful about falling. I also have problems with some robotic sounds from my device.  I am looking forward to improving with rehab.”
• Several users commented on robotic sounds with CIs and that sounds tend to sound more normal as time goes on.  Rehab can help and one user specifically mentioned Angel Sounds.
• One participant:  “I had CI surgery 5 days ago.  I haven’t had to take drugs other than Tylenol and am not in any pain.  I am looking forward to getting it turned on.”
•  There were nods of approval and general good wishes.

3. One participant said they went to a social event and felt different and sad about having to engage with people differently because of hearing loss.  Conversations in the car on the way to a rock concert were quite difficult. They were around people laughing and smiling, and they felt isolated and left out at times. It makes them feel sad/different, and it is difficult to have to engage with people differently.  

The participant was working at a Pride event and was able to communicate with deaf people using sign language. It was good to be able to communicate and sign with deaf people. The participant noted that there are days when they can dwell on the difficulties and challenges of communicating with people. But at the event with loud music, everyone was having a hard time hearing and repeating, “What?” “What?”  They felt left out and disappointed, but tried not to take it personally when people didn’t accommodate their hearing loss. They also went to a family reunion where people were telling stories about a recently deceased relative. It was very frustrating not to be able to hear many of the stories.

Another participant responded:  “We all sympathize. Smaller groups are easier for me. In big gatherings, try to take breaks.  And family and friends repeatedly don’t accommodate me even after repeated requests. All you can do is just accept them.”

4. A participant asked for news and feedback about HLAA convention in New Orleans from those who attended.

Participants shared this news:  Next year’s convention is in Phoenix.  The convention and workshop were great.  Every session has hearing loops/captions/ALS interpreting so you can hear everything. It is exhilarating to be around so many other people also experiencing hearing loss.  

There were classes on Bluetooth, telecoil, and personal success stories, one about a woman who had wanted to be an astronaut and whose hearing loss was discovered only after she joined the Air Force. Her talk was inspirational, and her story is in this month’s HLAA Magazine.  It is important to hear success stories of people with hearing loss. 

Glenda got a national award, as did Erlene!

There were many sessions on technology, but some of the most useful sessions were those on personal relationships. There was a class on auditory training, which stressed the importance of retraining. The convention hall was full of new products—apps, phones, captioned glasses and other things.